A4.13 Not admitted to hospital when it was required

Consultant psychiatrists and other clinicians across disciplines
stated that children and young people with learning disability
and/or autism spectrum disorder who required hospital
assessment/treatment were regularly managed in the community
instead. The high threshold for admission to non-specialist units
for these children and the high risks taken by families and
services in avoiding admission has been described above. In
addition, there were sometimes no available beds in specialist
LDCAMH/
ASD inpatient
units in England, or their distance was considered prohibitive by
families and/or clinicians.

Of the submissions to this survey, 8 (5%) were concerning
patients who remained at home with families or in their usual place
of residence (
e.g. residential school). 7
(5%) concerned those who went into alternative, non-hospital
provision such as residential school. These had a range of levels
of learning disability and none, but half those staying at home and
5 out of 7 of those going to alternative provision had moderate
learning disability. 2 of those remaining at home had interventions
from an
LDCAMHS
Intensive Community team which ultimately prevented the need for
admission.

There were some good outcomes, but at very high cost to services
and families managing under difficult circumstances. For example: "
Fortunately good outcome but unacceptable risks taken along the
way"; "This turned out to be the best case scenario eventually
available under the difficult circumstances"; "Cobbled together
arrangement which worked well for this young person but may not be
repeatable for others". However, despite best efforts,
outcomes for patients could be poor.

Summary of issues and outcomes for those not admitted to
hospital when it was required

A large proportion had
moderate learning disability

Tended to be
younger teenagers

Those remaining at home usually had
major mental illness

All had
highly challenging behaviour

Main reasons for not being admitted:

lack of suitable age-appropriate
LDCAMH/
ASD
ward

distance to travel to suitable English ward

cross-border Mental Health Act issues

There were
some good outcomes,
e.g. improved mental state and
doing well in residential care, or reduced medication due to
behaviour management strategies.

Difficulties and poor outcomes:

Prolonged period of illness and distress, some
still ongoing, with unnecessary recurrences of illness

High risks to patients, families and staff from
self-injury, aggression and destructiveness

Unsafe managing medication outside hospital
setting

Highly stressful and exhausting for families,
may be reduction in usual support services if unable to
manage

Costly to social care services

Difficult balancing risks of admission to
unsuitable ward with risks of not admitting

Lack of a thorough holistic multidisciplinary
assessment

Assessment/treatment took longer

Escalating behaviour, so child or young person
moved to care settings with escalating levels of security

Move to out of area residential placements:

Distant from family

Difficulty managing mental health assessment and
treatment

Complicated transition planning

Sometimes later breaking down leading to hospital
admission

Limited access to education

A4.13.1 Profile and presentations of those not admitted
to hospital when required

To preserve confidentiality with relatively small numbers,
trends rather than statistical data are reported in this section.
These patients ranged in age from 13-17 years, had a range of
levels of learning disability and none, but half of all of them
(and the majority of those who went to an alternative, non-hospital
provision) had moderate learning disability. All had additional
autism spectrum disorder. The majority of patients ideally required
an
LDCAMH
(including secure or individualised) specialist hospital admission,
although some were thought to require
YPU admissions (with
autism spectrum disorder expertise available) or a secure autism
spectrum disorder hospital.

The majority of those remaining at home had major mental illness
with severe symptoms,
e.g. severe depression, bipolar
disorder, catatonic symptoms and schizophrenia. Those who went to
non-hospital placements had high rates of suspected or confirmed
epilepsy and some had additional physical health diagnoses. All had
highly challenging behaviour, particularly self-injury, aggression
and destructiveness. Some also had sexualised behaviour, smearing
of faeces, were refusing to eat, drink or attend to personal
hygiene, isolating themselves (
e.g. refusing to come out of
the house for 2 years) or were stripping. Sleep was usually highly
disturbed. Some type of police involvement was common due to the
severity of behaviours displayed.

A4.13.2 Reasons admissions were required:

Clinicians described their patients as needing admission for
specialist age-appropriate multidisciplinary assessment and
treatment, including:

1. Assessment and monitoring of mental state, particularly where
major mental illness present or suspected

2. Medication management: a safe environment in which to make
changes and monitor medication and its side effects

The main reasons were a lack of suitable beds and the distance
to travel to suitable beds.

In some cases where a young person could have been managed on a
local adult
LD ward or regional
YPU, there were no
beds available. Others were considered to be:

too young for the local adult
LD ward;

to have too severe a level of learning disability for the
regional
YPU to manage;

unsafe to admit to
YPU due to high
levels of aggression;

inappropriate to admit to local adult mental health unit due
to level of learning disability and/or autism spectrum
disorder.

Clinicians noted that there were no appropriate beds in Scotland
for these children and young people. They attempted to assess and
treat at home as the 'least restrictive option' where a suitable
specialist ward was not available. They had to balance risks and
decided in some cases that it was better to keep a patient at home
or in the care of specialist residential care staff who knew the
complex young person very well prior to their additional mental
illness. This was as opposed to admitting to a non-specialist
hospital setting with staff inexperienced in learning
disability/autism spectrum disorder.

The distance to specialist beds in England was a problem, for
example, where patients became acutely unwell in the space of a few
days. Urgent admissions to
NHSLDCAMH
beds in England are not possible. Some children became too unwell
to travel. However, clinicians noted that a specialist unit in
Scotland would have been worth travelling to in some cases, but it
was not thought worth the risk to travel to a non-specialist unit
which would not have met their needs. Some parents chose to keep
their child at home where the nearest suitable bed would have been
in England at great distance.

Other reasons for lack of admission included lack of a
specialist
LDCAMHS
psychiatrist locally to assess the patient and advise on what was
required. There were also complexities about differences in the
Scottish and English Mental Health Acts and cross-border
arrangements which prevented admission in some cases.

A4.13.4 Interventions during time when admission was
required

A4.13.4 (i) Health interventions

High levels of intervention from
CAMH,
LDCAMH
or adult
LD clinicians were
given to attempt to manage these patients at home, or in
alternative social care/education provisions. Despite close
involvement in crisis situations, there was an inability of mental
health services to provide hands-on intensive support.

Psychiatrists monitored patients' mental state, carried out
medication monitoring and changes to medication. The latter was
complex and time-consuming due to children and young people with
learning disability having high propensity to side effects. A lot
of multiagency liaison and planning was required. In some cases,
community
LD nurses from adult
LD services visited
the patient's home regularly and assessments were carried out by
clinical psychologists and speech and language therapists. Where
there was no specialist
LDCAMH
psychiatry locally,
CAMH
psychiatrists sometimes sought advice and joint working from adult
LD psychiatrists. In
other cases,
CAMH
psychiatrists reported that they were simply unable to give the
intensity of working required for such complex patients, including
the time-consuming multiagency liaison and meetings.

Young people in some residential schools also had increased
visits from their general practitioner or school doctor to assist
in monitoring and managing the situation. In a case where no
LDCAMH
psychiatry was available, a pediatrician maintained very high
levels of involvement to support a temporary social care placement.
They were concerned about advising on mental health issues and
psychotropic medication outside their area of expertise.

Particular difficulties occurred when a child or young person
was away at residential school or in a care placement out of their
Health Board area. Their local
CAMH
services could not remain involved when they were away and if such
placements broke down quickly leading to exclusion it could be
difficult for them to make urgent assessments. In some cases where
there was a move to an out-of-area residential school for a young
person who required hospital treatment, that residential school was
itself in an area with poor access to
LDCAMH
community services. Therefore, although the school placement was
suited to manage challenging behaviour, the young person had less
access to mental health support which could have helped in the
assessment and management of their difficulties. Clinicians
reported having to travel to such placements at great distance to
provide assessment and support, with a knock-on effect on their
ability to carry out their other work.

A young person needing a secure
LDCAMH
inpatient admission was instead admitted in crisis to a social
care placement in a distant Health Board.
CAMH
colleagues in that Health Board helpfully followed up mental
health aspects but there was no
LDCAMH service
and this took much longer than it would have done on a specialist
hospital ward. Complex ongoing negotiations were required between
clinicians and managers in both Health Boards and the local
Council around assessment and treatment. This was exacerbated by
the young person approaching transition to adult services,
increasing the number of teams and agencies involved.

A4.13.4 (ii) Social work and education
interventions

Where patients stayed at home or their usual place of residence,
clinicians described close joint working with social work
colleagues to attempt to assess and manage ongoing needs. Extra
trained staff were put on shift in school/care settings, where
there were sometimes also reduced numbers of staff changes for the
individual young person. Living environments were adapted, for
safety reasons and to reduce sensory stimulation,
e.g. reinforced windows,
conversion of bathroom to wet room. Staff who knew the young person
well were often very helpful in monitoring their mental state.

Extra social care input was also put into the home, or families
supported via additional respite. Families too had to adapt their
living environment,
e.g. by removing things that
could be destroyed or living in one room.

Usually there was limited or no access to education during these
times. Sometimes access to usual respite and other services was
reduced during these periods as services were unable to manage the
child or young person's heightened levels of distress and
challenging behaviours. Therefore supports were withdrawn at times
that families needed them most.

Where a child or young person could not be maintained in their
home or usual place of residence, a number of social care and
educational provisions were made in the absence of available
hospital treatment. These included:

Specially commissioned short-term packages of care from local
respite care providers,
e.g. using a high level of
staff known to the patient, in a familiar physical environment,
but without other children or young people present. These could
impact on the capacity of providers to provide their usual
respite care to other young people.

Residential social care, extended respite care, secure care,
or school placements, using the existing facility or 'bespoke'
individual placement without other young people present.

High levels of staff (often 2:1) were generally required. These
placements were mostly outside of the child or young person's home
Health Board area and could be for lengthy periods, such as more
than 1 year. Some young people were moved between a number of units
across several different Health Boards, moving up to higher levels
of security as behavioural problems escalated. These young people
sometimes had multiple brief crisis admissions to non-specialist
inpatient psychiatry wards along the way. Clinicians commented that
going to a specialist
LDCAMH
inpatient unit or autism spectrum disorder unit could have allowed
for proper assessment and management and prevented these
escalations.

A teenager with learning disability,
autism spectrum disorder required admission to psychiatric
hospital for additional major mental illness, associated with
severe self-injury, aggression, destructiveness and smearing of
faeces. It was decided to keep him at his residential school where
staff knew him well, rather than admit him to a non-specialist
hospital. The physical environment was made more robust, extra
staff put on shift and a lot of extra input was given from the
local general practitioner,
LDCAMH
psychiatrist and school doctor. Effectively an inpatient unit was
created using these health professionals and expertise from within
the school. The outcome was good but would not be replicable in
other settings and had a big impact on all services.

A4.13.5 Impact on patients and family

These situations resulted in high levels of distress and
untreated mental illness for individuals for prolonged periods.
Parents took time off work for several weeks, effectively nursing
their child at home themselves, while also trying to support
siblings. They had to make changes to their homes for safety
reasons. It was a stressful and difficult time for many families as
they tried to support very unwell and distressed children and young
people, as well as manage highly challenging behaviour. They
expressed frustration and anger due to lack of resources. Some
families were grateful with what had been pieced together under
difficult circumstances but were described as being at the 'end of
their tether'.

A4.13.6 Patient safety

Patients as well as their families and/or staff were at risk
from high levels of challenging behaviour, including aggression,
self-injury and destructiveness in an unsafe physical
environment.

There were safety issues regarding the use and monitoring of
relatively high dose psychotropic medication in the community.
Clinicians had to choose between their patients remaining highly
distressed or risking potentially dangerous side effects in the
home setting.

A patient who became rapidly unwell was managed at home "on a
wing and a prayer" in a very dangerous situation. The patient was
not eating and drinking and required significant doses of
psychotropic medication to manage their mental illness. The
psychiatrist was unable to do blood tests,
ECGs, and other
appropriate observations. They felt that this situation was borne
out of "desperation" and unacceptably high levels of risk were
managed due to lack of an appropriate
LDCAMH
inpatient resource. It would have been completely unmanageable
had the family not been extremely competent and easy to work with
and the patient not too aggressive.